Whether you’re caring for aging parents or disabled children, taking care of family members at home can be extremely challenging. Family caregivers work long hours, often unpaid. We will hear from a woman who cares for a disabled family member with developmental disabilities, an adult child caring for an aging parent and a caregiver fighting for change at the Oregon Legislature. We’ll also meet people whose work it is to help these caregivers navigate the system and to get support.
Shasta Kearns Moore is the mother of two disabled children and the author of Medical Motherhood. Susan Hedlund is the Director of Patient and Family Support Services at the Knight Cancer Institute. Sabine Wilson cares for her partner’s disabled sister. Susan Beale cares for her 85-year-old mom. Leslie Congleton is the co-founder and leader of the Powerful Tools for Caregivers program.
Note: The following transcript was created by a computer and edited by a volunteer.
Allison Frost: This is Think Out Loud. I’m Allison Frost. We’re spending the hour today talking about what life is like for in-home caregivers, the parents caring for their children with disabilities, adults caring for aging parents, spouses or other family members. They’re not professionals and they’re often unpaid and unsung. In this hour, we’ll get a variety of perspectives on the challenges faced by those giving care and those supporting caregivers. We recorded this conversation recently with a live audience on Zoom as part of a special show on the subject.
First we’ll hear from Shasta Kearns Moore. She’s a writer, an advocate, and the mother of 11 year old twin boys with disabilities. Susan Hedlund joins us as well. She directs Patient and Family Support Services at the Knight Cancer Institute. Shasta Kearns Moore’s sons were born three months early. One uses a power wheelchair. They both experience ADHD, and one has Cerebral Palsy. I asked her to tell us more about them aside from their disabilities.
Shasta Kearns Moore: I mean, they’re great kids. I mean obviously I’m a Mom, so I love them. They’re bright and loving and intelligent, and there’s a lot of things about this life that I didn’t know before I had kids with disabilities. It’s definitely been an experience, but I mean, they’re just very happy kids when we have the structures and supports that they need.
Frost: Well, let’s talk more about that. How much of your day is taken up with caregiving for your two children?
Kearns Moore: I mean, it’s all day. Like any parent, in some ways we are very lucky in that we have gotten to a point where I have time to be on a show like, this for example. I mean, if you would have invited me 10 years ago, I couldn’t have strung two sentences together about how my life has gone, because I was literally just trying to survive the day with my newborn twins. So I really feel like, this past year has been so eye-opening. I hope, for so many people, in going through this public health emergency because so many of us, parents of kids with … disabled children have had a personal health emergency and a lot of the same things apply. We were already avoiding germs. Traditional work options didn’t work. Schools couldn’t keep our kids safe. Government services were slow and dysfunctional. Health systems are already overwhelmed and unreliable. All of those things that everybody experienced over the last two years, that was our normal, you know? We medical parents were even sharing memes amongst ourselves about, ‘welcome to Fight Club’, because this new reality that everyone is suddenly experiencing – that’s our reality every day.
Frost: Can you give us a sense of your day-to-day though? Certainly you have a lot of challenges that a lot of parents don’t, and your care for your children day-to-day looks, I’m sure, a lot different than, say, my day-to-day.
Kearns Moore: Yeah. So you know, my children have personal care needs that you could imagine for somebody who can’t get out of bed by themselves. I don’t go into a lot of detail on that stuff because that’s their private lives, but you know, it’s day-long. It involves tube feeding and all of the personal hygiene things. But really we’ve managed to structure our lives around this … that it’s just another need, you know? It’s not a special need.
Frost: Well, you referenced this earlier, about how this last year has been, and the pandemic itself. But especially in this last year, you were able to get some federal assistance as part of one of the COVID-19 relief packages. We want to get into some of the details of that policy later. But can you describe the difference that that funding has made in your life?
Kearns Moore: It’s made a huge difference in my life, but it’s really made a huge difference in my community. I mean, I’ve met so many people, especially single-parent households who just … the needs are constant and they’re always there whether or not you have caregivers, and so for so many people in Oregon’s community, this funding was life-saving, and life-changing. I talked to one woman who said that she felt like she didn’t have a victim mentality anymore because she didn’t have to apply for public assistance because she was actually getting paid for the labor that she hadn’t been paid for for 15 years. So yeah, I mean, I feel like this funding, it’s not special funding either, because you could hire anybody to do these in-home caregiver hours, but it’s just recognizing and having the dignity of saying ‘yes, you as a parent know how to care-give for your child and you are the best caregiver that they have.’
Frost: Yeah, and you were able to then have money to hire a professional caregiver to come in and help, if I understand that correctly. But you had trouble getting help because of the shortages. Do I have that right?
Kearns Moore: Yeah. So I have hired caregivers and they’re awesome. We love them. That is through the program. That’s the program that exists through K-Plan [Community First Choice Medicaid Plan], but the difference is that the restriction against parents of children who get 240 hours a month or more was lessened. So you know that part was really great, that parents were being recognized for the labor that they were already doing.
Frost: You mentioned that you talked to some parents, some women. You do a newsletter and a podcast. Tell me more. What are the kinds of stories that you’re hearing from other mothers who are caring for children with disabilities?
Kearns Moore: I mean, it’s been so huge. Yeah, so it’s called Medical Motherhood dot com [medicalmotherhood.com]. And there’s so many stories that I’ve heard, of just, how much our children have benefited from this. And really we’re not unique in that. There’s other places, like in Colorado or California, that have already had this program. Arizona just started one. Hospitalizations decreased dramatically. You know, 90% of families said that their children were happier than they’ve ever been. Their mental health struggles … 90% said their children were healthier than they’ve ever been. Most families reduced their need for public assistance. They were able to have their kids go out in the community more. I mean, really, the family is a unit, right? And so when you support … when you pay for the labor the parents are already doing, because they can’t work outside of the home due to these needs, then it really lifts up the whole system and allows for childrens’ lives to be better. I mean, we all know about social determinants of health, right? It’s clear that it’s better for everybody.
Frost: You actually talked to one woman who was almost homeless and when she got assistance, she could actually keep caring for her child who had disabilities. Otherwise she would have been on the street.
Kearns Moore: Yeah, that was Carly. And yeah, she’s terrified of when, you know … This funding is tied to the public health emergency. So when the federal public health emergency ends, whether it’s July 15 or later, that special allowance will go away in Oregon, and she will have to give up her child. I know two other mothers who are also facing a similar situation. Not only is that unethical, but it’s contrary to Oregon law. Oregon law states that we need to have the supports that children need to stay in their homes.
Frost: I want to hear more from you, Shasta. Stay with us. But I’d like to bring in Susan Hedlund now, the Director of Patient and Family Support Services at the Knight Cancer Institute. Susan, I imagine that some of this is very familiar to you, these stories that Shasta was sharing. And of course there are many different kinds of in-home, unpaid caregivers ‒ parents, spouse, family members ‒ caring for members of their family for various reasons including cancer, disability, aging, illness. Can you speak to the similarities and differences in the work of caregiving.
Susan Hedlund: Thank you Allison. And also, thank you Shasta.You’re an inspiration to all of us. I think there are more than 52 million informal and family caregivers in the United States. And if we were paying all of those caregivers, you could imagine that that would be a phenomenal amount of money to actually cover the cost of that care. And Shasta said, I think the relief that has come in the last year ‒ has been over the last couple of years ‒ has been really significant. What’s hard, I think in general, are finding reliable caregivers, and the pandemic made that even harder.
Frost: Another thing that is similar is the stress and the isolation that many caregivers face and that leads to significant negative health outcomes, right? I know you’ve done a lot of work on this. Can you paint us a picture of some of these higher risks that caregivers face?
Hedlund: You bet. We know that for family Caregivers, their higher levels of depression, higher levels of anxiety and difficulty getting help, both because accessing mental health care can be difficult in general these days, but it’s also very hard when somebody is also providing care. I hear often from family members that they’d like to avail themselves of a support group or a mental health counselor, but they don’t feel like they can take the time away from their loved one. We know that it takes its toll physically on people. There are numerous studies that suggest that the physical health of caregivers that provide care over a long period of time can really be at risk from everything from elevated blood pressure to heart disease and to other stress related consequences.
Frost: And that actually leads to a higher mortality rate?
Hedlund: It can. For elderly caregivers who are providing care to a spouse or a loved one, the mortality rate for those Caregivers compared to their peers who are not caregivers is 63% greater, which is a stunning statistic and speaks to the level of stress that people are experiencing.
Frost: And so as the broader category for younger people who are caring for a variety of different loved ones, that’s also very high.
Hedlund: It’s a little bit less than an elderly caregiver, but it still ranges at 40 to 50% of an earlier mortality rate then appears in the same age groups that are not providing care, which again really speaks to the point that Shasta was making of how critical it is to get additional assistance, to get breaks, to be able to get support outside of the home, and to really find better ways to infuse support into these caregiving situations.
Frost: You spoke to this earlier, the fact that caregivers just may be so stressed out and not feel like they have any time to seek care for themselves, mental health care or even physical care that they may need. What, in your experience, do you think makes a difference to tell caregivers, the message to tell caregivers to encourage them to actually take that time, which can feel so, so hard. What do they need to hear?
Hedlund: You know, I think a couple of things. I think that I try to talk with families about the fact that, if things fall apart for them as caregivers, that that will leave their loved one in even a harder position. That usually speaks to caregivers because they’re people who are putting their own needs last. So often they postpone their own primary health care appointments. They postpone going to the dentist. They postpone all kinds of things that support their wellness. I also think the kinds of things that Shasta is offering, and that you’re offering today, Allison ‒ of podcasts and information that helps people feel less isolated ‒ helps connect people with resources, and also to encourage people to take a break.
Most caregivers have people in their lives that will sometimes say something like, ‘Let me know how I can help,’ which is a very vague, kind of ‒ kind, but vague offering. What could be more helpful is if people in one’s life can offer specific things like ‘I’ll pick your kids up at school today’ or ‘I’ll come mow your lawn’ or ‘I’m going to the store, can I get groceries for you?’ ‘Why don’t I come sit with your loved one so you can go walk or get your hair cut,’ or any number of things like that.
So taking advantage of those offers that are out there, and then paying attention to your own symptoms relative to mental health. If you find yourself feeling pretty depressed, if you find yourself kind of slipping into habits that aren’t particularly healthy, it may be time to reach out and get some extra help and support.
Frost: Back to you, Shasta Kearns Moore. Now, we talked a little bit about your advocacy. You are asking Oregon lawmakers to provide funding to caregivers when this federal aid runs out in June or possibly July. Can you explain a little bit more about who your group has appealed to and what exactly you’re asking for?
Kearns Moore: Yeah, so we’ve talked to many layers of government to try to get the answer to that question of what exactly we’re asking for. It’s very confusing, because it seems like the only thing that’s standing in the way is a checkbox on our medicaid waiver applications that would say ‘Yes, you can employ parents’ and single OAR’ [Oregon Administrative Rules].The agency, the Office of Developmental Disability Services, says that we need to have a legislative input on a program list. To me, it’s just as simple as lifting a restriction, but I understand that we need to have kind of a broader conversation about the money piece.
As Susan mentioned, yes, it will actually cost money in order to fulfill Oregon’s promise to its disabled children for these in-home caregiver hours right now. They are balancing the books on the backs of unpaid, mostly parents, who are doing this labor. They have already assessed their children, and the fact that their needs are many hours per week more than a typical child their age, and yet about half of those hours go unused. I know anecdotally from the community that the ones that are used are used by other relatives, nonparent relatives, because it’s very difficult to find quality … and I’m very lucky to have the ones that I have and I’m very lucky to have the family members that I have. But it is hard and those needs exist and they exist at 3:00 AM, and they exist on weekends, and they exist on holidays, and there’s somebody who is doing that work and I think that we should pay them to do it.
Frost: We got an anonymous attendee who’s listening and watching now, wrote, ‘I work full time from home and advocate for my kiddo’s services as his primary caregiver and work at a job that barely makes it possible for ends to meet. I am his employer of record and constantly feel like my own health care and long term wellness suffer a lot’, as we’ve been talking about.’ This person’s wondering if you can weigh in on this question: ‘How can the push to allow this waiver extend to self-employed single parents?’
Kearns Moore: So right now this special exception applies to children who have 240 hours or more per month. The movement that I’m a part of is trying to extend it to all 5,000 children who qualify for in-home caregiver hours. Now, that is 0.6% of Oregon’s population of children. So it’s a very small number of high-needs children, and I don’t think it’s unreasonable to extend it to folks with any amount of hours. So if you have hours, you can join a Facebook group called Allow Oregon’s Children to Keep Parents as Caregivers, and there are many updates per day, per week there.
Frost: What have you heard so far about these efforts? Are you encouraged?
Kearns Moore: I mean, democracy is a slow and messy process, right? So, it was very nice when, like I said, when everybody was experiencing a public health emergency all of a sudden the solutions were really clear. You know, ‘let’s get rid of all this red tape, let’s, you know, make work from home easier, let’s do all this flexibility.’ Suddenly when it’s you and your life, it makes sense to have all these freedoms, but when it’s those people over there, it’s different, right?
So, I had a lot of hope that our kind of global collective experience of a new normal was going to have a lot of change in people’s minds and hearts about what’s needed to have a truly inclusive society, to have those schools that are designed for everybody, to have those government services that are truly serving the people that they intend to serve. What I’ve seen is that a lot of people are kind of clinging to the old normal. And I get it, you know? I went through that too with our personal health emergency. We had to adjust to a new normal and it’s not easy, and it’s scary. But what I can tell you from being on the other side of that is that there is a whole world of possibilities that you didn’t even know existed. There’s so many ways for our services to be designed better, and we just have to be willing to accept the new normal.
Frost: Are you going to hear anything concrete about whether you’re going to get the help you need from the Oregon Legislature?
Kearns Moore: There are legislative day hearings, so not public hearings but invited testimony. So we’re hoping that some kind of legislative concept or something will come out of those discussions.
Frost: Well, thank you so much for sharing your story with us, Shasta and to you, Susan Hedlund. Shasta Kearns Moore is a writer and advocate, and the mother of twin boys, Mac and Jasper. And Susan Hedlund is an Assistant Professor of Medicine and the Director of Patient and Family Support Services at the Knight Cancer Institute.
I want to bring on our next guest now, Sabine Wilson, she is a freelance writer who lives in Lincoln City and is the primary caregiver for her boyfriend’s sister, Megan. Thanks so much for being here, Sabine.
Sabine Wilson: Thanks for having me.
Frost: Tell us a little bit about Megan – about how old she is and what is she like? What’s her personality like?
Wilson: Yeah, Megan is a 33 year old woman, adult with disabilities. She is very passionate about art. My partner has a Surf Shop that he runs. And Megan has a company called Sally’s Skateboards that she uses her art designs, that we print onto sweatshirts and different apparel. She also has a card rack. She loves to make different cards ‒ that is birthday cards, Mother’s Day cards ‒ and she also loves to bead. She likes to make bracelets and necklaces and rings. She spends a lot of time just creating. And she’s just a very optimistic, ambitious, intelligent young woman who I enjoy spending all the time with. She inspires me a lot.
Frost: And, yeah, and so the nature of her disability is it’s a developmental disability?
Frost: So obviously, she’s very active and talented. What kinds of things does she need help with?
Wilson: Yeah, she needs help with a lot of things. She’s unable to use the stove [and] needs help with money management. She is not able to drive, and without her glasses, she’s considered legally blind. So a lot of things that are high up – she is below average at 4′11 ‒ so she needs help reaching things, cooking, describing certain things to her, meal planning, picking out outfits for the weather. And yeah, she’s pretty good at asking for help, and she enjoys learning, but she does need help with other cleaning things.
Frost: Which is, of course, why we’re talking to you. You you first started caregiving for her in 2019, if I understand correctly, and it was a bit of a bumpy process getting started, from what I understand. Were you able to get, initially, the information that you needed to even get started with her, quickly and easily?
Wilson: Yeah. You know, I didn’t have as much information as I would like. I’m a person that likes to research and study and learn as much as possible before performing a task, especially one that includes taking care of a human life. And there wasn’t too much medical history there for me at all. It was kind of starting from square one.
Frost: And one of the first people, from what I understand, that you got help with after you got going, was a personal support worker named Amy Farhat, and you paid out of pocket for that?
Wilson: Yes, we paid out of pocket. We did not know of any resources for adults with disabilities on the coast. We live in a relatively small town, and then we heard through the grapevine of this nonprofit called Beach Buddies which dealt with, exclusively, adults with disabilities. And Amy Farhat was our first PSW [personal support worker] who is just absolutely wonderful and pivotal in our caregiving journey.
Frost: She actually recommended that you become a personal support worker for Megan, right, So that you could actually get paid for the work that you’re doing? How was that process? I know that’s a big question.
Wilson: Oh, yeah, that’s a loaded question. Yeah, so when we found out that we could get paid for the work we were doing, we were like, what? We had no idea that that was possible for us. It was kind of like multilayered. We just didn’t know. We were not caregivers, you know? I’m 27, my partner is 35, and we didn’t know that we could be paid for that. And when I looked more into the process of becoming a PSW, I thought that it was absolutely wonderful. I was excited. I had drive. I was eager to learn, and help support this person that I loved, who deserved the time, expertise and care that I thought the process would provide. So, you know, I jumped right in.
I took the CareWell course that I found online, finished it really quickly, was told I would get my provider number within a matter of weeks. I did not get my provider number for another five, six months, not from lack of trying, but it was a lot of back and forth with this bureaucratic system, you know, that kind of values the procedure over helping the families that they are supposed to provide help for in a world that was not built for families like ours, in a world that was not built for for people with disabilities. It’s already hard enough finding the resources that we needed to be the best care providers that we could, while also taking care of ourselves. And the system was just a lot of back and forth on return phone calls, emails pointing me in different directions, sent going back and forth. And it was just incredibly frustrating. I started off with a lot of drive and just kind of ended feeling really defeated.
Frost: Ultimately though, you kept at it. And I talked to your former personal support worker, Amy Farhat and she told me ‒ and I think she told you, too ‒ that yours was the worst case that she’d ever seen, although what you experienced was not uncommon. She speculated that a lot of people would quit a lot earlier than you did. So ultimately, you were successful. So now you are a PSW – personal support worker – for Megan, right?
Frost: What difference has that made?
Wilson: Man, I can’t like really … feel like I can’t verbalize the type of help and support that it’s provided for both me and my boyfriend to be able to … because, like, it turns out that free labor burns you out. Who knew that that was happening? So, you know, being able to get all these certifications and educate myself and feel qualified to take care of a human being, and in the process also learn how to take care of myself has been huge.
You know, there was like one point in the caregiving journey where I had gotten her health insurance, gotten her a primary care physician, set her up with a dentist, established eye care, and then I realized I didn’t have health care and I didn’t have an OBGYN, and I hadn’t been to the dentist. And becoming a PSW and getting compensated for the work that I’m putting in, being able to clock in and out, being able to separate my personal life versus me as a caregiver, has just been extremely … has made all the difference for for both of us.
Frost: What advice would you give someone in your position who might be thinking of trying to do something similar?
Wilson: Yeah, I mean I wish I could write a whole book on what not to do because I went down many different avenues, but it’s just it’s hard because you want to give advice to people on an individual level. But it’s a systematic issue that somebody like me who was, you know, driven and had the time and resources to put into educating myself wasn’t able to do so. But I guess to tie back to your question, my answer would be to just don’t quit. You are deserving of a living wage and to take care of yourself, so that you can care for others. To go through either a private brokerage or agency I guess, which is what I ended up doing, which ended up being a lot easier. We got established within a week versus six months going through Lincoln County.
Frost: So that’s an amazing difference. How are you and your whole family doing now?
Wilson: Yeah, we’re doing so much better. We’re starting to catch our stride, and the more educated I get and the more I’m able to fill up my cup, as you know the previous speakers were talking about, the better the caregiver that I am. Of course, we deal with bumps along the road. It’s a very tiring job and there are different supports that we need to utilize, like to take breaks. I was like, okay, yeah, I should take a vacation or take more breaks and hire someone for more hours and stuff. So it’s a learning experience, but overall, we’re doing a lot better. [It’s] still an uphill battle. There’s a lot to still do and accomplish. But when I look back at how far we’ve come from when we first took the full time caregiving role, I’m very proud of ourselves for sticking with it.
Frost: That was Sabine Wilson, a freelance writer who lives in Lincoln City and is the primary caregiver for her boyfriend’s sister, Megan.
Susan Beale lives with her 85 year old mother and Leslie Congleton runs a program called Powerful Tools for Caregivers. Beale came to Portland from Colorado after her mom had a stroke and she soon realized she would need to move in in order to provide what her mother needed. I asked her if she knew what this unpaid job would be like when she started it.
Susan Beale: No, I had no idea. All I knew is that mom had a stroke and I needed to go out and see what I could do. So I did. I had been in Denver for nearly 30 years. I came out to Portland. Mom was in the hospital, and I started basically just running on my feet, like doing what needed to be done, and it didn’t stop for a long time.
Frost: I’m sure there were some things that were necessary as she recovered in the immediate aftermath, and then they changed a little bit when she got, you know, better recovered. But what were some of those things that you had to just jump in and start doing?
Beale: Well, because she’d had a stroke and was having difficulty with many things, including cognitive things, I anticipated that when she got home, she wouldn’t know where … she wouldn’t be able to remember where things were in the house. And I didn’t know where things were in the house. So about three days after she was hospitalized, I found out that she qualified to go to a rehab hospital for two weeks. I decided that I would take advantage of that time and basically I ripped everything out of the house. I took everything out of every corner everywhere. I put all of the pens and pencils in one place, I put all of the … I just reorganized the house, basically. I pulled out a bunch of furniture that I knew was going to be unnecessary and in the way if she came back with a walker.
Frost: Yeah. And you’re doing it in a completely new city, as well, so not a lot of network to call upon.
Beale: No, no.
Frost: That’s amazing.
Beale: The fortunate thing there was that I knew my mother’s friends and her friends were very supportive to her, and that made me feel like I could focus on what I felt needed to be done around the house.
Frost: And what was it like when she came home and you started this actual day-to-day caregiving?
Beale: It was difficult, because neither she nor I were accustomed to her new normal. Thankfully, she had learned some excellent skills. She had two weeks of practice to learn how to, for example, go up and down stairs, how to feed herself and things like that. But we both had to learn how to navigate without me being too helpful or having too high of expectations.
There were many times, situations where, because she experienced the symptom of aphasia, which is difficulty with verbal communication, you can’t always find the words that you want and sometimes the words that come out of your mouth are not what you actually mean. So when she would tell me that she wanted something, I could become very confused because she wasn’t actually saying what she really meant and sometimes she would get things reversed. She would say ‘left’ when she meant ‘right.’ So it was very confusing and it was stressful… it was very stressful. I think the most difficult part was she and I, we’d had a certain balance of power my whole life and that started to come into question when she suffered the stroke. Who is leading now, because she wasn’t accustomed to me leading, nor was I, and she couldn’t, but she wanted to. So that was a very difficult period of time.
Unfortunately she fell a few times. After a six month period had gone by, and I went back to Denver because I thought things were gonna be okay. We tried it for a month. Things seemed to go okay, and then we were going to do it for another six weeks and see how it went. We tried that and before I could come back to Portland, the pandemic broke out. But by that time we had hired a caregiver who my mother loved and I was confident in him. And so we just worked with him. My brother and I would meet with him by phone once a week. That went well for a while, and then my mother started to fall. She had a few falls, and more than once she hit her head. And after a stroke, that’s not … I mean it’s never a good thing, but as she had those additional falls, her cognition, her abilities diminished. And so unfortunately with the diminishment of her abilities, that actually provided some clarity in the balance of power in the relationship. It made it a little bit easier for her to accept me leading and there wasn’t as much head butting. But you know, the different phases of the journey were difficult for different reasons. So that… that phase, the difficulty behind us, you know there are difficult now.
Frost: You have new difficulties, challenges. And your brother lives in Washington, DC, so he’s not near, physically to help with this. And the caregiver, you said that your mother really loved, how much is he part of the day-to-day now?
Beale: Right now, he’s not, because a big part of what we needed when we hired him was assistance with mom’s occupational therapy, physical therapy, speech therapy homework. I was doing so much other stuff, I just thought if he can just help mom with this, I would be ever so grateful. So he would spend an hour with her every day, five days a week, working on that. After about a year, a year and a half, those exercises had taken mom as far as she could go. So there was no longer a need for him to help out there, and the money started to add up. So we decided to take a break and just have him come for breaks when I needed to fly back to Denver, so that’s where that is.
Frost: Yeah. So doesn’t sound like you have regular respite with your mom?
Beale: No, I go back to Denver, like, once every six months. The last time I went in January, I told myself, ‘you got to do this once every three months, at the very minimum. You can’t be doing this once every six months,’ and I haven’t been able to swing that and so, yeah … So I do need better, I need to make it happen, better respite care.
Frost: And we haven’t even mentioned your personal health challenges. You have MS and you have a greater need than a lot of people for a lot more rest. How are you able to manage that and still be there for your mom?
Beale: In many ways I’m just really, really lucky. My mom can bathe herself, she can toilet herself, she can clothe herself, she can feed herself. She’s safe, for the most part, in the house. That is to say, she doesn’t typically present that much of a fall risk, but I wouldn’t want to leave her alone for a day. So the fact that she can do so much of that on her own means that I can sleep in, if I need to. I know many days when I have to sleep twelve hours, you know, go to bed at nine o’clock, wake up at nine in the morning or if I sleep nine hours, I’ve got to take a three hour nap in the afternoon. Mom’s accustomed to me napping in the afternoon and she’ll just sit in the kitchen and read her tablet and you know, stuff like that. So I’m just so grateful that it’s worked out as well as it has. Yes, I do have multiple sclerosis and I have retired on disability … Social Security disability because of the multiple sclerosis. And so that actually made some things easier to decide. My brother has his son out in DC. He’s got a job that has crazy hours. He’s got his girlfriend, his home, his whole life out there. And I just felt like it would be easier in many ways for me to move from Denver because my schedule could be flexible. I could take mom where she needed to go and I knew that I could get the rest when I needed it.
Frost: I appreciate everything you said about how lucky you are and you’re relying on all the things that you do have. And it’s still very hard, clearly, and when you saw a flyer at your local senior center called Powerful Tools for Caregivers, you enrolled in that. Can you tell me a little bit about how you felt when you first went to that first class?
Beale: Grateful. I was grateful when I saw it in the flyer. I thought, ‘wow, here it is.’ I mean, I’ve been doing this for awhile. I need to go to this class. I was really excited when they made it available to us. Going to the first class, I got to meet other folks who were in similar situations, caring for various people in their lives, and in different stages of their own lives. And so we got to get to know each other a little bit, and then I got to feel like someone who knows more about this journey is going to explain to me some things that could be helpful to me. Because prior to that, it was just me trying to figure it out on my own. I mean me, doing Google searches, or me getting on YouTube and watching videos, or TikTok. And all of that was helpful, but there’s so much information out there it’s completely overwhelming, and I need someone to kind of give me the big picture and so I can focus in on what I need once I’ve been oriented. So that’s what was so exciting for me, was that somebody else was going to say, ‘Okay, here’s, here’s the lay of the land and these are some things that you maybe want to learn how to master or get better with.’ These are some resources and they’re going to present it in a way that I can digest.
Frost: Had you ever met anyone else that was in a caregiving role?
Beale: I’m sure that I’ve encountered them at work, or in my personal life, but I never got to see up close and personal. I was never a close friend to someone who was a caregiver at the time that we were friends. So no, not really well.
Frost: Susan, this is a good time to bring in Leslie Congleton. You created this Powerful Tools for Caregiving that Susan Beale is taking more than two decades ago now. It’s a series of classes over six weeks, and an accompanying book is also available throughout the country and in Canada and South Korea. Now you lead the overall program, but for the many years when you were actually teaching the classes, what did you find that the caregiver participants needed the most?
Leslie Congleton: When it was first being pilot tested, the program, we had focus groups with the caregivers, and it became evident that we needed not just one class on communication, but two of the six weeks on communication, because one of the most important things are caregivers being able to effectively communicate with other family members, the medical professionals or other health care providers, and you know all of the topics on reducing stress, improving self confidence, practicing those self-care skills, setting goals and problem solving, communicating some of their challenging feelings, needs and concerns, and making tough caregiving decisions along with locating helpful resources.
Frost: Yeah, I imagine this would be helpful for quite a few people. Susan found a flyer at her neighborhood senior center. Is there a common way that people find out about these classes?
Congleton: Well, we do have a lot of different sponsors that we work with, and so our collaborative partner organizations are definitely one way that people can find out about the program. So they may be the aging and disability services centers, senior centers, the parish nurse ministries, different assisted living facilities, and certainly our website – powerfultoolsforcaregivers.org – lists the classes and the class leader trainings online.
Frost: And hospitals are also one of the places that could connect people?
Congleton: Definitely hospitals for sure. Faith-based communities … really, we’ve got quite a range of different types of sponsors.
Frost: And this has been around, as we mentioned, for decades now. What is the evidence that this is having an immediate and a lasting impact?
Congleton: Yes. Well, we do have evidence-based outcomes over the years. We worked with researchers that did extensive evaluation of the caregivers responses to the classes, and it does have evidence-based outcomes that have been reconfirmed over time. And also we’re excited that we were able to work with Dr. Katrina Sirwe at Concordia University in Wisconsin. She pilot-tested and researched the virtual-delivery model of the program, and we’re really pleased that last year, in 2021, her research demonstrated that both the virtual and the in-person, six-week class series have the same evidence-based outcomes as the original research. So it basically has four outcomes. It increases caregiver self-efficacy, increases their self-care behavior, increases use of community resources, and helps manage some of the challenging emotions of caregiving.
Frost: That’s so great. And this, as I mentioned, has spread right throughout the country and other countries. But what is your sense of the the demand versus the supply? Does everyone have access to it that would want it?
Congleton: I mean there could never be enough powerful tools for caregivers classes, nor could there be enough caregivers support programs and respite programs for caregivers. There are many of us on a similar path trying to support caregivers and there could never be enough. As Susan had mentioned earlier, there’s a growing demand for caregivers. They have growing needs. It’s expanding the numbers. One in five people are caregivers. So we could never have enough programs like Powerful Tools for Caregivers to meet the needs.
Frost: Really, Susan Beale, how long can you keep doing this with, even with the support that you’re getting?
Beale: I go back and forth. I need an end game, because I don’t think I want to keep living with mom. We were together in a tiny little house, 824 square feet. And I don’t have a lot of friends in Portland yet because it just hasn’t been easy to find them for me. So I have talked to my mom and my brother about the feeling that I have that I can do this for maybe another year or so, which would put my time caregiving for mom at about four years. And at that point, you know, I was basically going to tell my brother ‒ or I’m working up to i ‒ I already have in many ways told him that after four years, I think I have to hang it up and by that time his son will have graduated high school and ostensibly will be going off to college somewhere. My brother will be free to move anywhere he wants in the country, and he used to live in Portland. And his girlfriend used to live in Portland, as well. So I think, you know, if they come back and they want to care for mom, great. Then I can go back to Denver and resume the life I had. And if they don’t want to, then maybe we can talk about assisted living and see if that looks like a good fit at that time. It certainly wasn’t when my mother first came out of the rehab hospital. She was adamant and I’m sure most … well, many who need care don’t want to go to assisted living. But I feel like, you know, if I give her four years, especially given the fact that there was a pandemic, I’m just so grateful that mom wasn’t in assisted living at the time when the pandemic broke out. So that’s what I’m thinking right now and we’ll just see, kind of take it as it comes.
Frost: Susan Beale lives in Northeast Portland, caring for her 85 year old mother. Leslie Congleton runs the Powerful Tools for Caregivers Program, a class and a book that supports caregivers. This conversation was recorded with a live Zoom audience in May, part of a special event on the challenges and supports for in-home family caregivers.
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